Meghan – beatingcowdens

All Dogs go to Heaven…

Published on December 10, 2014 by beatingcowdens5 Comments

Although there is some debate on that, I stand with Billy Graham.

We lost our Allie Girl today. And just when I thought there couldn’t be anymore sadness, our hearts are broken in half.

Allie found us. Rather, she found Felix, in August of 2007, when PLUTO Rescue did their events at Petsmart. It was August 4th, Felix’s birthday, and we stopped in just to grab a bag of food for Lucky. Meghan and I walked through the aisles enjoying some of the puppies around for adoption. Ready to leave, I asked, “Where’s Daddy?” And there he was, knee to knee – eye to eye- with Allie. “This is the dog I was meant to have,” he told me very matter-of factly.

I came up with a litany of reasons why a second dog was a bad idea. ( We already had Lucky)

“What if they don’t get along?” (Solved in 2 seconds flat when they met outside Petsmart. They were fast friends.)

“We are having company for Meghan’s birthday next week.” (They offered to delay the adoption 2 weeks.)

“Our yard may not be big enough.” (We passed the home visit with flying colors.)

“We don’t have the money right now _” (I was grasping. The fee was so reasonable. And they offered to postdate the check a month.)

I lost.

But I won.

Big time.

Allie joined us on August 12, 2007. The guesstimate for her age was three. I suspect that was conservative. She stepped into our home with none of the puppy nonsense new dogs cause. She was trained, didn’t bite the furniture, or pee on the rug. She needed a little tiny training to settle down with her food. Easily done. And she really was the perfect dog.

She was Felix’s dog from the get go. No matter where he went she followed. She slept on his feet at the TV at night. She waited for him on the weekends if he slept in. She sat at his feet when he whistled. She greeted him at the door. She knew it was he who had freed her from the cycle of adoption and fosters, and found her her forever home.

Her “tough” side – much like Felix’s, was put into check with the right love.

I took a bit longer to catch on. It took a few baths, and some nail cutting, and adjusting to calls from the groomers that they couldn’t service her. I had to understand her, her abandonment, and her need to trust again. Once I “got it,” we did just fine.

Mostly I fell in love with Allie because she loved my Meghan. I can remember nights, and there were so many sleep deprived nights, that Meghan would wake crying, and if we didn’t hear fast enough, Allie would come and get Felix and I and make sure we took care of her. She became so protective of Meghan – from “hide and seek” to watching her in the pool, to not resting until Daddy dug her out of the snow bank, Allie knew Felix was her master, and protecting Meghan was her purpose.

And how could I not love the dog that loved my two favorites?

Meghan, being without siblings, took to the dogs as her “furry sisters.” She always used the number 5 to represent her family.

And when she was sick, or hurt, or recovering, as she so often was, Allie was loyal and attentive always.

Being sick is the pits. Having Cowden’s Syndrome is horrendous. Having a dog or two to love you through it – definitely a bright spot.

There were so many nights. More than can be named. So many nights of tears and frustration and sadness and anger. Soothed by the love of a dog.

We love Lucky. Very much. But we always said Allie made Lucky a dog. Allie turned her in the right direction. Made her less neurotic and more normal. They were sisters. A good pair.

Cowden’s Syndrome just got a little harder to swallow.

Life just got lonelier.

Allie got sick fast. Maybe a few weeks of not being quite right. And a few days of really being laid up.

We took her to the vet Sunday. It looked bad. I took her back today. It was over. Her belly was full of fluid. Even without eating – 2 pounds heavier than Sunday. They didn’t offer to do blood. Or treat.

“This is it,” the vet said.

And Meghan and Felix came, and we sat as a family. And we said goodbye together. We hugged, and held, and loved and cried. Then we left.

Our world, and our lives forever changed. Richer for our experiences, more painful for our losses. For only those who love deeply, can hurt.

Thank you Allie.

Hopefully Grandpa Tom finds you. You two always got along. Cause I firmly believe I’ll see you both again.

Normal?

Published on July 19, 2013 by beatingcowdens4 Comments

Really?

Normal.

That’s it?

Normal MRI.

Three hours, two different magnets, three doses of contrast dye.

Six days of agonizing waiting.

The vascular surgeon called this morning.

I want to be happy.

I want to be relived.

I want to be sure I believe he pored over the images on the disk and didn’t just read the report.

Unfortunately I can not be happy, or relieved, because there is pain. Lots of pain.

When I told Meghan about the conversation she got angry.

I cried.

I don’t know how to help her except to keep pressing and pressing for answers.

At least she knows I believe her. I suppose that’s more than some kids in her boat have.

But still its hard.

There is no diagnosis.

There is pain.

She has work to do.

Writing is agonizing.

Swim practice certainly doesn’t help.

What do you do?

I can’t take away everything she loves.

I can’t absolve her of responsibilities – even when I know they cause pain.

I called the rheumatologist. For a small fee I sent her the CD too. It’s only money.

Maybe she will look harder.

I feel like I have been beaten up.

I spent the afternoon writing a letter to the corporate office about chronic inconvenient car problems.

Really I am tired of all this fighting.

Can’t we all just get along and do the right thing?

No words of wisdom today. Today we do it Dory’s way…

Overwhelmed

Published on July 4, 2013July 4, 2013 by beatingcowdens1 Comment

Yep. Totally and completely overwhelmed.

I know I am not the only one. But I think sometimes the first step is admitting it.

Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.

My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)

It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)

So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.

The entire month of June I salivated for July. I couldn’t wait for schedule free days. Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year. The July calendar makes me nauseous. Literally.

I mean we might have gotten bored eventually, but we have barely been near the pool. I say bring on the boredom.

Most of our appointments are in Manhattan. That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity? day of the week? air pressure? There is ABSOLUTELY no predicting.

We could take the bus. But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do. So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.

And, since there is no predicting, there is always a meal to pack. Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.

Sometimes we are on time. Sometimes we are late. Always we wait, and wait.

Meghan is the most well-behaved child. I don’t lie because there is no need. I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit. For hours and hours. I couldn’t pull this off if she was any other way.

But, I don’t know if I would have a choice. There is no traveling to Manhattan at 4 pm, on a school night. It just can’t be for either of us. So we do what we must.

Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years. She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.

I am in the basement, shredding, and writing while I wait for my overworked shredder to cool. Trying to get a few things off the “to do” list.

My head is constantly going – processing new information learned this week. Thinking. Asking. Wondering. Worrying.

Today is a good day. Daddy is home. The ultimate distraction for her.

We had a long talk this morning, me and my girl. I tried to push her to reach out to some friends. To go and be carefree like she should be. Even if its only for a while. Everyone has something we reminded each other.

I still can’t shake my need for order. I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.

Cowden’s Syndrome – our curse, and our blessing. Sucking away hours that should be spent on the beach or in camp. Forcing a little love to grow up way too fast. Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.

I lost my driver’s license today. Just the license. It fell out of my pocket. For $17.50 I ordered a new one on-line. Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina. They don’t know what they are up against.

The beach… and all her other plans – I will do my best.

Just trying to get by one day at a time.

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

The thought for the day... — The thought for the day…

Listening while distracted

Published on February 17, 2013February 17, 2013 by beatingcowdens2 Comments

You know the rules and the laws on driving while distracted. Hands free cell phone devices, watch the road.. etc. etc.

But, what about listening while distracted?

The sermon in church focused on this last week, and honestly, 8 days later it is still on my mind. A personal challenge to me is to stop listening while distracted.

This is not an easy task. There are precious few people brave enough to venture inside my mind. It is quite a mess. Once you sort through all the noise, its hard to find focus.

The list of thoughts on any given day could include, but are not limited to…

What appointment to we have today? How many? What will the wait time be? When is the next one?

Will we get bad news, or just a 6 month return ticket?

How is Meghan feeling, what is her pain like?

Why does she hurt so badly, and how come no one can figure it out?

Will she feel well enough to participate in her after school activity?

How do we balance school with life? How do we get all the homework and projects done amidst her chronic health issues?

What about her IEP?

Do we keep the para next year? Do I need an advocate to help me? Have any of these people got any CLUE about Cowden’s?

What about the bills? I know we CAN pay them, but there are quite a few. How many phone calls do I need to make to be sure that they are all done right? When will I make the phone calls?

How much will the heat cost this cycle?

Will we need a new roof this year?

Did I update the EZPass account fo the new car after the accident?

What groceries do we need and WHEN do I have to go?

How are Grandma and Pop? Really?

Will the article for Rare Disease Day represent us? What about the ribbons? Will they be distributed properly? Will the kids – and adults benefit from it? What if Meghan has to speak at her school? Will she know what to say?

Why is there so much homeowork all the time?

How am I going to finish this math series with her while studying for Social Studies?

Does any of that TRULY matter for 6th grade, or will they just realize I have a pretty smart kid?

When is the FUN supposed to start?

…. AND I COULD GO ON AND ON AND ON AND ON…

So, with that many thoughts running through my head (and sometimes more,) how can I ever be an active listener to ANYONE?

Meghan and I are best buddies. She is a great kid. But we do butt heads sometimes.

I have to wonder if its because inside that 75 pound 4 foot 10 body, she also is listening while distracted.

Tonight we will stop.

We will focus.

We will look at each other.

We will listen carefully.

Maybe we will actually hear each other if we eliminate some distractions.

Her father is very good at clearing his mind – eliminating distractions. Meghan and I – not so much.

But how can I hear what anyone is saying if I don’t LISTEN?

I see it all the time in this technology age. Parents on cell phones, ignoring their kids. Kids pleading for attention, and to be heard.

I am no better if I let the distractions of my mind get in the way of my conversations with my family.

When I ask God to listen, He does. When I listen carefully, He speaks. This I know.

Life is way too short to miss out on what is right in front of me.

I am working on clearing my head and avoiding “Listening while distracted.”

Paying it Forward

Published on October 28, 2012October 28, 2012 by beatingcowdensLeave a comment

Meghan‘s school motto is “Pay it forward,” and it is one of my most favorite things she has learned in her 4 plus years there.

The students are taught that it is important to give to others, with no expectation of return. And they develop the knowledge that when others do for them, favors can not always be directly repaid. It is actually a good philosophy of life. Do for others for the sake of doing good. If everyone follows that, chances are when you need a helping hand, someone will be there to stretch it out for you.

So this morning we joined some of my colleagues from school at the “Autism Speaks” walk. We are facing a major hurricane tomorrow. Schools have already been closed. The MTA has shut down bus service, yet the turn out at the BEACH for this walk, was absolutely amazing. I was full of pride as I stood with my colleagues in support of one of our own. The proud Mom of a handsome autistic son, and an absolutely beautiful daughter, is a woman of true class. She is a teacher at my school who I am grateful to have as a friend.

Her team raised close to $2,000 in support of Autism research, and the love in the air this morning was overwhelming.

Everywhere I looked there were fighters. Young autistic children, and their support networks – strong and mighty. Prepared to do whatever they can for their children.

Even though our battle and journey differs from theirs, I felt I was among kindred spirits. Scores of families that keep fighting, keep battling, to ensure their loved one has whatever they need. In so many ways we wear the same…

We will fight, by whatever means necessary for our children. That makes us all the same where it matters. The battles are different – but the war is essentially the same. And we will not be stopped until it is won.

Paying it Forward…

This is the same family, that created Meghan’s denim ribbon necklace. This is the same Mom, who – even though she has a million things on her mind each day, took my daughter’s need for an identity to heart. Wearing her own, beautiful diamond puzzle piece each day, she took Meghan’s concerns home to her husband the jeweler – and he made Meghan’s needs his priority.

autism necklace — Her own necklace is far more beautiful, but the point is she “gets it.”

And it wasn’t long before Meghan had this beautiful piece around her neck, representing rare genetic disorders, like our Cowden’s Syndrome. There was nothing of its kind in the world, but not to be deterred – this Dad, who also “gets it,” didn’t stop until it was made. My girl has her identity now.

necklace on table — A denim cause ribbon, crafted after the Global Genes Project‘s slogan, “Hope it’s in our Genes!”

Hopefully one day soon, The Global Genes Project will be able to sell these to anyone who wants them. I know talks are taking place right now, and it is so exciting.

So this morning, it was easy to make our way down to the beach, to support Autism Speaks, and a great family. It is easy to remember it is not all about us. That others suffer deeply, and daily.

We are home. Showered an in our PJs. We are prepared as we can be… waiting for the storm. But we will persevere. It will be OK. The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love. Pay it forward. You will be awed by the return.

Comfortably numb

Published on October 23, 2012October 23, 2012 by beatingcowdens1 Comment

I walked into a meeting this afternoon at the tail end of the work day. I brought the key to my room, and my phone in my hands. I sat and listened to the presenter, and as I got up to leave I gathered my things and realized my key was missing. Lately I have been losing everything. Maybe its stress, maybe estrogen loss, maybe I am just getting old. Who knows?

I looked everywhere. This year we were each given one classroom key, which also unlocks the bathrooms. It is a really important key, and I have been so careful. I even make sure I have pants with pockets every day so I can keep track of it.

I dumped the bag one last time, checked my pockets and checked my coat. No key. Realizing I was running late for Meghan‘s swim class, I resigned myself that I would have to look for it tomorrow.

Walking down the stairs something gold caught my eye. I looked down and there in the breast pocket of my shirt was my key. I only knew it was there because I saw it. That was when I was struck with laughter and remembered that

I always keep my key in my PANTS pocket, because I can feel it against my leg. No idea how or why I put it in my shirt pocket, but I won’t be quick to do that again.

They may be firm. They may not sag. But they certainly lack the feeling of being real.

Nothing like being able to laugh at yourself when the day is a bit rocky.

It’s been over 6 months, and I guess I am used to the new girls – because most days I don’t pay them any mind.

On the way out of the building my Assistant Principal asked me if I had found my key. I told him I had, but when he asked where it was I spared him the details. “TMI,” I said.

I went to pick up Meghan humming “Comfortably Numb,” the whole way. Probably not exactly what Pink Floyd had in mind, but hey – it works for me!

Persistence…

Published on August 3, 2012 by beatingcowdensLeave a comment

My daughter found this photo the other day. She was searching “funny dog photos,” and stopped when she reached this one. She came to me and said, “Mom, I think you will appreciate this.”

I don’t know whether I was more impressed by her ability to know that I would in fact get a good chuckle out of this, as it seems to be the story of our lives, or by the photo itself.

Ingenious really. People do this. They create these photos, and some seem silly or insignificant. Until there is one photo, phrase or saying that you really relate to. Then somehow it all makes sense.

As we turn the corner of summer into August, I know we still have a few weeks of vacation left, but I start to reflect.

School begins for me on September 4th, and for Meghan on September 6th. When we share our summer vacation stories, what will we tell?

We snuck in some fun. There were some play dates that were a blast. There was a trip to the beach, even if only for a few hours. There was swim class, and dance class too. There were books galore – read just for fun – far after the three she “had to” read.

But this year there was no camp. And it was strange. I missed the schedule a bit, but it was a necessary break – for both of us.

Practical reasons wouldn’t have allowed much attendance at camp. We were at too many doctors.

Darn Cowden’s Syndrome. Check this, scan that, see this doctor, make sure that is ok. Multiplied times two it could be a full time job. But, since I have a full time job, that I missed an obscene amount of days from last spring while my body parts were being cut away – summer is for all the doctors that we can squeeze in.

Ironically, no one really answered too many more questions.

Persistence.

Before the end of August Meghan will have had 8 (very productive) Physical Therapy sessions, 3 visits to the pediatrician, a trip to the vascular surgeon, the rheumatologist, the oncologist, the geneticist, the orthodontist, our “second” pediatrician, and she will have had an MRI and 2 sonograms.

I didn’t do so badly myself. I will be able to boast 3 surgical follow up appointments, 2 trips to the dentist, a visit to a new oncologist, which leads to a visit to a GI doctor, and abdominal MRI, a dermatologist for a skin cancer screening, and a visit to the thyroid surgeon.

And those are just the ones SCHEDULED through the end of August.

Persistence.

Not sure where it will get us. All these doctors. I will get them on a nice schedule though. Start to consolidate. Double up days. Next Tuesday I have 3 appointments in a row. Why waste time?

They want us to add the cardiologist back in. Just to be safe they tell me. Everyone is so busy covering their own ***, they often miss the important stuff.

I get that the screening needs to be, and that it needs to be intense. It could be argued that this intense screening saved my life. But there is still such a need for doctors with a clue. Doctors who care. Doctors who connect the dots.

Persistence.

Although some days I feel like the dog, digging through the concrete… I do believe it will all pay off.

Actually, it already has.

So maybe it isn’t the “perfect” summer, but its a necessary one. Me and my girl…. together.

The Cowden’s Syndrome Roller Coaster

Published on July 18, 2012July 18, 2012 by beatingcowdens1 Comment

Maybe if I could attach my cell phone right here…

I can not tell you for the life of me why Spiderman was on my mind today, but I was thinking I could use one of those web shooting things. It could be modified to hold the cell phone that is constantly in my hand! I remember when Meghan was so colicky, and I used to carry her all day in that Baby Bjorn carrier. I LOVED having my hands free again. I hated that she just kept crying, but at least I could move around a bit. I am starting to feel painfully tethered to my phone. I waited forever for the vascular surgeon to call. Now Dr. K from Boston called Saturday, and we still haven’t connected.

1D10A322-10E4-41B9-8F21-EE59F4EF0940 — Paranoid to miss his call, I carry my phone EVERYWHERE I go. I am not kidding, that is my cell phone in the plastic bag at the beach today.

54DBA6A0-F7C3-4554-AC2E-A3334649A24D

Today was a banner day.

It was the FIRST time we have been to the beach since before her first birthday.

This child was so sensory sensitive that we were both deeply traumatized by the first trip. It took us almost 8 years to work up the nerve to do it again, and boy has she come a LONG WAY!

We only stayed a few hours.

Long enough to get into the sand and build a castle. Long enough to find a few shells. Long enough to jump a few waves. Long enough for her to say, “Mom my knee is clicking every time I step and it hurts.”

Clutching my old scratched up cell phone like it holds the answers to all life’s problems I silently, desperately, wish it would ring.

But then what?

Will Dr. K have a single answer?

Will he want us to drive 5 hours just so he can say, “I don’t know?”

Yesterday we saw Dr. P – the geneticist at NYU who started all this about a year ago.

It was a friendly visit, catching up on all we have done. I had a chance to thank him for “catching” the Cowden’s Syndrome a year ago. It was his desire to dig deeper, and to solve the puzzle, that undoubtedly changed the course of our lives, and likely already saved mine.

He asked a lot of questions again. He looked closely at Meghan, especially her legs. He pointed out again the 1/2 cm discrepancy. He pointed out the swelling in her LEFT knee, likely the result of her favoring her right knee. (The AWESOME PT Dr. Jill, already called that one!)

He listened to my concerns about her avoidance of activities. He said the fact that the Celebrex is working means to him she likely has arthritis due to deterioration from small amounts of blood circulating the knee joint. Not JRA, but degenerative arthritis. He said she can’t stay on Celebrex forever. And although I knew that I was busy shuddering at the alternatives.

He will nose around, and see if he can get a closer orthopedist to take a look. Then he will look for an oncologist for me. In the mean time he said, let’s just get a screening sonogram of her kidneys, to be safe. Just a baseline.

3 hours later we had word that her kidneys are “beautiful” and untouched by Cowden’s. We left NYU exhausted, and relieved, but still waiting. Always waiting, and wondering, and worrying. What next? Can we fix it? Wait… nothing new please! We haven’t fixed the last thing yet… and so on and so on.

Tomorrow we will go back to the pediatrician to recheck for the recurrent strep. Then, a much anticipated play date for Meghan.

Then Friday, its to the plastic surgeon for my recheck, with another playdate for Meghan.

All the while my cell phone will be close at hand. Last year at Disney they finally got me on Big Thunder Mountain Railroad. Good thing. I think it’s a case of life imitating amusement park here.

Cowden’s Syndrome is a great big roller coaster, so I better get a stronger stomach!

Summer vacation begins…eventually!

Published on June 28, 2012 by beatingcowdensLeave a comment

Summer Vacation began today. Yesterday was the last day of school for Meghan and I until early September.

I love this time of year, where I always say I get to have one full-time job (stay at home mom) instead of two. Well, maybe it’s two full-time jobs – medical manager of all things Cowden’s related, AND stay at home mom… But either way it is a break from the responsibilities of work, with all the benefits of still receiving a paycheck.

Meghan’s report card was beautiful. She makes us so proud. We talked all about the end of third grade and the beginning of fourth. We ordered a new backpack (Have to order early if you want that special GREEN!)

Then she asked what we would do today, to start off our first real vacation day. I don’t think she was surprised when I answered with, “A doctor’s appointment and an MRI.”

So this morning I got up at regular time. I watered the vegetables in our garden which is growing so beautifully this year. I made sure Meghan was dressed, and the dogs were crated. And we walked out the door at exactly the same time we caught the school bus every morning for 10 months.

We made it to NYC in time for my surgical follow-up. I have officially had all restrictions lifted, although the chronic bleeding continues! I was told not to worry, and it should be gone in another 4 weeks. Delightful.

Then, we walked a few blocks to the knee MRI. She was in the tube at 10:02, with only 0.25mg of xanax to take the edge off, and lasted in there until 12:05. unbelievable. They told me they had 5,000 images. I left with a CD in hand, and a promise there would be a report by Monday.
We got home in time for a quick lunch. I managed to get the CD of the MRI, combined with a cover letter, in an envelope to Dr. K, head of orthopedics at Children’s in Boston, and sent it off in the mail. Some time next week he will call to tell us if the date for surgery will be sooner… or later.

We made it to a friend’s pool for a few fun hours, to try to salvage the day. She went to bed exhausted, and soon I will too. I hope this isn’t an indicator of what summer holds, because I am striving for a serious amount of doctor free days. More time with the kid, the pool, and the tomato plants.

Come on summer… be good to us. We need you!